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Showing content with the highest reputation since 05/11/2020 in Blog Comments

  1. Susan, I've had so many scheduled trips cancelled, I've become an expert in travel insurance claims! My medical team all suggest a strict quarantine till herd immunity is established. This due to my very low pulmonary capacity and the primary attack point of the virus is my under capacity lung. I'm sitting this one out confined to the house or driving Martha to a shopping destination and remaining in the car. Martha disinfects everything brought into the house including Amazon packages and the mail. There is much clamor to open the nation and oddly I think that is a good idea.
    5 points
  2. LexieCat

    The Roscopal Effect

    Thanks for sharing this, Ro. I've just had my first experience with post-chemo/immunotherapy progression (so far mild) and am looking into clinical trials. There are at least three worth consideration at this point, I think--each with a slightly different approach or twist. Two are where I'm currently being treated and the third is where I was first diagnosed (and had my lobectomy and subsequent second diagnosis of Stage IV). I'm waiting for someone there to get back to me to discuss. I've sort of skimmed over people's stories about clinical trials, focusing on what was most relevant for
    4 points
  3. LexieCat

    The Roscopal Effect

    LOL, I'm just envisioning the puzzled look on the oncologist's face when somebody asks about the "Roscopal effect" and the ensuing argument when they ask if they meant "abscopal." You may have to register that trademark!
    3 points
  4. Roz

    The Roscopal Effect

    Hi LexieCat and Tom and BridgetO, Thank you for your responses to my blog. LexieCat-deciding on a clinical trial is a really tough process. I carefully looked into the research and then went with what my medical oncologist believed was the best option. For my second trial, I also had a second opinion from a different medical oncologist and both agreed it was worth trying I wouldn't go into a trial unless you were physically ready for it. The side effects can be quite nasty, depending on the drugs involved. Luckily, once you are off the trial, the side effects eventually go away.
    3 points
  5. After some little thought, what is written here is very good and should be pointed out more often. I suppose it's part of being just human to believe that we are in control when the fact is we are not. I will try to develop a new mindset in this regard...one more thing that is hard about this all...
    3 points
  6. Antonin

    anguish...

    Sorry that you have to go through this with your mom. We lost our mother and as a stuborn lady that she was, she decided of the moment to let go. At he hospital she waited for me to arrive and then said: " I did have a good life and at 88yrs old am now ready to die!" . Good luck and courage!
    3 points
  7. BridgetO

    A Day of Thanks

    Yay for you! Great pics, thanks for posting them. Bridget O
    3 points
  8. Thankfully, Stage IV approvals are swift...
    3 points
  9. Steff

    Ready for yet another new normal

    Susan - I echo your and Tom's thoughts - my mom says all of the time...I didn't beat lung cancer to die from this crap! lol I've been lucky enough to work from home too. I've come to absolutely love it and dread the day I must return to a physical office and coworkers (who aren't the furry, 4 legged type). As a part of management, I have had a voice in what our "new normal" will look like. My state has 4 phases of start-up, each County is considered a separate entity (apparently COVID doesn't cross county lines!). My county just entered Phase 2 (don't ask what that all means because I
    3 points
  10. Tom, I should have hired you as my new consultant with your knowledge of travel insurance. As much as I don't want to admit it, I'm pretty sure I'm home for the long haul. My husband and I are considering an RV as a travel option because we can get away but not be reliant on others to clean up after us, feed us, etc. I'm with you - I didn't beat lung cancer to get taken out by this, either. I have plans!
    3 points
  11. LouT

    5 Years!

    Boy!!! I really missed this...happy belated anniversary... Lou
    2 points
  12. Congrats, Tom! Nice feet and good pedicure job! I expect to see at least another 17.
    2 points
  13. Darlene, I have done the same! My State Legislators have responded with their agreement, but the Governor is not budging! So much for government by the people for the people. This is vaccination by paycheck, not priority patients. Thanks for spending your time (and more importantly your energy) advocating for your brothers and sisters! Michelle
    2 points
  14. I have written my Governor's office, legislators, and multiple news stations. As a stage 4 lung cancer patient in active treatment, I can't even sign up to get on a waitlist in my state. This needs to change for all of us! This isn't about being patient as I keep hearing, this is about life and death for us.
    2 points
  15. Claudia

    A Day of Thanks

    Awesome post Tom. Thank you for sharing. Claudia
    2 points
  16. Hi, sorry, just seeing this. What I did was to very carefully answer EVERY question about the tests and treatments I've had since I was diagnosed in July (and included my surgery from 2017). I got a call from a caseworker a few days later who wanted copies of my paystubs. I asked if I should actually mail the records I had (I'd printed them all out, of course) and he said no need--they would get everything they needed. I think the specific answers I provided helped speed the process--they knew what they were looking for. Like I said, it wound up being 10-14 days from first application to appro
    2 points
  17. I have Stage IV LC and was approved about 10 days after I applied. It helps, I think, if you have all your info ready about all your tests and treatments. I, too, have the 5-month waiting period before I get my check (it's actually 6 months because checks are for the previous month's benefits). The good news is that the time runs from when I was diagnosed, rather than when I started treatment and stopped working. For non-Stage IV--patients who may actually feel worse symptoms than someone like me--you do have to go through the drill of showing you are too disabled to work. From what I und
    2 points
  18. There can be a lot of confusion regarding the two programs offered by Social Security for those who become disabled. SSDI (Social Security Disability Insurance) is for those who worked and paid into the system and then become disabled and meet the SS's criteria to be considered disabled. Generally, you need to be considered unable to work for a least one year. IN my case my Disability date was the last day I worked. I was approved in about 2 months, but needed to wait for the sixth month to start receiving my monthly benefit. My understanding is that Stage IV Lung Cancer is approved
    2 points
  19. Deb W

    Covid and me

    Thanks, Lisa. Your story inspires me. Deb
    2 points
  20. Thanks Tom. This is advice is so important to me. Thanks for responding so thoughtfully to my posts and for being here.
    2 points
  21. PaulaC

    Ready for yet another new normal

    Hey guys its been awhile since I've posted. It's really a different world right now. I'm like the rest of you staying at home or going to one of my sons and watching a granddaughter. My husband still works but was furloughed until last week which makes us both nervous. He's 72 and works at the airport. The only good thing about his job is it's not around a lot of people. We've been talking and have pretty much decided that when I go on medicare he'll retire. Medicare is another thing that worries me. I'm lucky to see one of the grand babies because they were quarantined and worki
    2 points
  22. Tom - we're going to need a bird-cam set up in your yard - livestream!
    2 points
  23. Tom Galli

    Ready for yet another new normal

    Susan, I had a similar conversation with my doctor Friday with the same prognosis--about of COVID-19 will put me in the grave. He says to stay inside (or well socially distanced in my front yard) and do not mix with the public under any circumstances. He's not even sure if a vaccine is enough protection and suggests I'll need to wait till herd immunity develops. That could be several years. So I am homebound and down to watching birds, answering forum message boards, and writing my novel. Yes, I'll rig up my camera and get some photos of the "boss cardinal" and post them up. St
    2 points
  24. I had an appointment with Super Doc on Thursday. He said to stay home as long as my job will allow me too - he said the risk of exposure is just too high. He's hopeful a vaccine will make some impact but that won't be a reality for 6 to 12 months, so I'm home until then. I told him I was more scared of the virus than a lung cancer recurrence because I felt sure the virus would kill me. He said it would. He also quashed my trip - I knew he would and I knew it was the right thing to do. Still sucks. Hope you all continue to stay safe!
    2 points
  25. Lisa Haines

    The Roscopal Effect

    Ro, I am so happy that this worked well for you and also HOPE it will continue. I first learned about the abscopal effect when I was on Immunotherapy which I had just after radiation (after progression) and there were studies that also showed that it can happen when you do Immunotherapy right after or in conjunction with radiation. Not sure if that is WHY I had such a good result, but I did and I am so thankful to my Oncologist for being such a great researcher! I truly believe she saved my life! Lisa PS: Very creative to call this the Roscopal effect! 💜
    1 point
  26. BridgetO

    The Roscopal Effect

    Yay for you Roz and the Roscopal effect. Thanks for sharing this--I hope others will benefit.
    1 point
  27. Tom Galli

    The Roscopal Effect

    Roz, This is a remarkable story about a superb result that only happened because you had the courage and tenacity to insist on treatment. Your story also points to the importance of consulting with all medical disciplines who treat lung cancer: thorasic surgeon, pulmonologist, medical oncologist and radiation oncologist. The latter is not often seen but as you’ve demonstrated has very effective treatment tools to apply. I do look forward to hearing you tell us of future scans showing diminished cancer until it is gone! And, you are NED! Stay the course. Tom
    1 point
  28. Roz

    5 Years!

    Congratulations on your 5 year Cancerversary Susan!!! Wonderful news!! Ro
    1 point
  29. Tom Galli

    5 Years!

    Just wonderful to read about this important milestone Susan! Stay the course. Tom
    1 point
  30. LouT

    Reoriented

    Bridget makes a good point. We often fight to hold onto life, but then don't actively live it fully. Bridget's friend did just that; "lived it for what it was worth". I would never presume to tell you how to spend your money, but rather would always support a decision to live each day, week, month, year or years fully. Lou
    1 point
  31. Thank you and THANKS to everyone who is reaching out to their state Legislators and everyone we can to do ALL we can to make Lung Cancer a TOP Priority.
    1 point
  32. LouT

    anguish...

    The separation of those we love is always tough. My heart goes out for you. Lou
    1 point
  33. Tom thank you so much for your insightful into surviving Lung Cancer. I love the helpful tips to mange treatment and live life. ❤️Thank you.
    1 point
  34. Hi, and welcome. You might have better luck connecting with others here if you post on the Veteran's forum, here: https://forums.lungevity.org/forum/64-us-veterans/
    1 point
  35. LouT

    A Day of Thanks

    So well said Tom. You are an inspiration for so many of us. Happy Thanksgiving. Lou
    1 point
  36. Hey Lexie, Did you follow up with submitting any medical documents to them when you applied? I filed 2 days ago and it said I should send medical documents but they weren’t specific on what? I did give my Doc a heads up that I applied and they would probably be hearing from them. Thanks for any help, Babs
    1 point
  37. ColleenRae

    Covid and me

    Thank you for sharing your story, Lisa...
    1 point
  38. LouT

    Covid and me

    What a wonderful story and frankly a lesson to us and our society about what we should be doing during this time. Like you, I first stayed locked in the house; working on project after project until I ran out of things to do. Now, I'm careful when I go out. I take precautions but I meet people for lunches, visit with my daughter and get out to enjoy the autumn weather. Locking ourselves in our home is hard on us physically and psychologically and we really need to work on a balance in our life. You seem to have found it and I applaud you for it. Thanks again for sharing your story with u
    1 point
  39. That is amazing, Heather! LUNGevity has two big fundraisers coming up in October. One is the Breathe Deep Together 5K and the other is eRace Lung Cancer Endurance Challenge-this can even be done as a relay! If anyone would like to participate or encourage family and friends to join, all of the information can be found here:https://lungevity.org/for-supporters-advocates/support-our-work
    1 point
  40. Tom, Not sure how I missed this one, but thank you for this and ALL of your posts. I honestly don't know what we'd do without you here! I'm having a particularly tough morning and read this - it helps. Big cyber hug for you. Thank you.
    1 point
  41. Thank you Tom. I just found this and I really appreciate your advice. You are truly an inspiration.
    1 point
  42. Thank you Tom! There is some some excellent, factual, and usable spiritual advice here that anyone, at any point should take to heart! Especially if one is a Newbie. I could have used it two years ago! Thanks again!
    1 point
  43. Great Info Tom ! Thanks for posting, I'm going to Bookmark this for future use and to share with other Newbies! This is the type of information I WISH I had known back and the time of my diagnosis.
    1 point
  44. Things are a little different Down Under. Our office has remained open all along .There are only 6 of us in 97sq.m. so social distancing is not a problem. Everyone drives to the office. I think the Australian death toll stands at 106. Below is my M2C that I got late Feb. The old geezer in the top left is me. That car is a little beast.
    1 point
  45. Roz

    Ready for yet another new normal

    I've been thinking of all of you!! It's not easy to have the "lifting" of the precautions in the air and various phases for Covid. I have been to the beach but with at least 6-8 feet between me and anyone else. But people are now onto outdoor dining with the 6 foot distance in place. I decided I should just email my Oncologist to find out what she thinks. So far, just staying in the house, or my car to go to the beach.... Be well everyone!! Best, Ro
    1 point
  46. I, too, have become an expert on travel insurance lately. We had to cancel two big trips, one to Italy and one to Portugal. In the absence of a cancer diagnosis, our insurance would not even have paid for our canceled trips since it exempted the pandemic from covered causes. We are fortunately retired so it has been fairly easy to isolate and order everything we need online. We've also been doing video appointments with doctors to the extent possible. That said, going out for medical tests has been challenging and we're not looking forward to my husband having to go out for treatment soon
    1 point
  47. Steff

    Ready for yet another new normal

    Bridget O - I used to have a magic wand, given to me when I first entered into social services.....but lost it years ago. I tried using it several times, but apparently I don't know how to use them and it was a complete failure 😁
    1 point
  48. hope16

    Hope Is A Good Thing

    beautiful message Tom ...so true
    1 point
  49. Great analogy! I'm swinging for the fences every day....
    1 point
  50. Lung (Cancer) is a very nasty opponent...it doesn't usually play by many rules so be prepared to be prepared. No hitters and shut outs are frequent but if you take a swing you never know what might happen.
    1 point
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